This post is to all the people with schizophrenia (in all its forms – paranoid, schizoaffective) who have asked me about love.
There is nothing wrong with being single. Being single can and is a positive choice for a lot of people, but there are many people with schizophrenia who have asked me and confided in me about their hope to partner up, get married, and share their life with another person.
When a society constantly shows people like us as defeated, broken, or in the worst case scenario as monsters, it is hard not to internalize negative messages about yourself. I have heard people of color talk about their own internalized racism. Why would people with schizophrenia, the most stigmatized of the mental illnesses, be any different than people of color when it comes to internalizing the messages we see, hear, and experience every day? We aren’t different; we do the same thing.
I’m here to tell you that hopes and dreams do come true. Schizophrenia doesn’t have to equal loneliness. Having a severe mental illness doesn’t mean that other people get all the good stuff and there is nothing left for us. Schizophrenia doesn’t mean we are the messages society tells about us. We all know better. We are more. We are talented. We are lovers. We are fighters. We have wisdom. We have humor.
After it all, we are human, and we are worthy of love, and I believe if we want love we have the same chance as anyone else of finding it. I don’t believe for us it is like finding a needle in a haystack, I believe love is out there weaving its magic tail, and we need to find the strings of it and hold on, and from those strings begin to tie together a life. Possibly the life we have always dreamed of, or even better.
I know how hard it is to believe that your soul mate or the love of your life will come along. For me, the love of my life grew out of a long relationship. When I first met JC, he was the type that was a neatnik, and I was a slob. I had a dozen dirty coffee cups in my car, and while I was at work, he would clean out the car, wash all the cups, and leave them in the dish dryer in the kitchen. He put things away, and I tossed them on a chair, the floor, or the bed. I thought we would never make it. But as soon as I got sick, we knew that bigger things than how neat or sloppy we each were at our doorstep.
An episode of psychosis is a wake-up call about what is important and what is superficial. We quickly got past the superficial and started focusing on the big stuff. And the big stuff can ironically be small stuff with big importance, like the little things we do to show our love like making each other coffee, a back or foot rub, and always being the one in the other’s corner, cheering.
I feel like I have a gift for you. It is possible that you already know about this gift, or have seen it. If you haven’t, please do yourself the favor of watching it. It is a romantic story with a character who has schizophrenia. In my mind, it is all of our stories. It is the story I want the world to see. It is a story I can accept. It is a story I can relate to and one that I would tell people to watch if they want to know more about schizophrenia (there are others, but this one, this one…yes, this one). It is free on Roku, and it stars a young Johnny Depp, the name of the film is Benny and Joon.
If Hollywood (one of the worst offenders of stereotypes) can give us a movie about us that makes my heart sing, there is hope. Of course, we know there is always hope for all things, especially love.
I have read many blogs and books by people with schizophrenia, and many of the writers express a desire to date and eventually get married. Unlike me, there are many people with schizophrenia who live in hiding (not disclosing their illness for fear of the consequences), and many of those people are married. I assume their spouses must know of their illness even if most people in their lives don’t.
On the other hand, I am open about my schizophrenia, and I am married, but it may not be like someone would assume. I was married early in my twenties and divorced before my first psychotic break. I don’t think my first husband would have stayed with me and worked with me if he had experienced my illness. (I say this not knowing for certain because he never had that opportunity, chance, test, whatever it is someone would call it).
I met my second husband after my first psychotic break, but at that time my diagnosis was bipolar disorder. If we had both known at the time that my true illness was paranoid schizophrenia, would we have made it to our wedding? I don’t know. I can’t say. I wasn’t diagnosed with paranoid schizophrenia until I was in my early forties. By the time I had the correct diagnosis my husband, and I had been together for at least ten years.
During ten years of marriage, my husband had grown to know a lot about me. The diagnosis of schizophrenia came as a shock to us, and I suppose it could have caused some people to throw their relationship away, but not us. When I received my diagnosis, I had just started to recover from a six-month episode of psychosis. Our marriage was on wobbly ground during that period. I thought during that time that I wanted a divorce. My husband thought that is where we would end up – in front of a judge with a no-fault divorce.
Once I was on medication and started to return to my old self, my husband started to heal from the injuries I caused him during my psychosis, and he started to understand the difference between schizophrenia and me. I am one person when I am on the right medication and someone quite different when I slip into psychosis. This period is where I find my husband to be remarkable. Not while we were dating and thought I had bipolar disorder, but when he had lived with me as someone who was psychotic for six-moths and received no love, or understanding, or connection from me, and then, when I recovered, he stayed and helped me rebuild my life.
Even though my husband and I had a whole history together before discovering I had schizophrenia, I think it is possible for people to find a lifelong partner if they already know that they have schizophrenia before meeting their potential mate. I think having the opportunity to get to know each other is the critical step in the process. Two people need to have some feelings and history together to be able to navigate and process a diagnosis of severe mental illness.
I think the same is true for making new friends. If those of us with schizophrenia let people get to know us a little bit before we tell them our diagnosis, then they will have already developed their impression of us, and first impressions are powerful. Many people meet me, and they know about my schizophrenia before even shaking my hand because other people have told them and many saw an article about me in People Magazine a couple of years ago.
I would prefer that people get to know me before they know my diagnosis, but I don’t always have control of that. I think if you do have control over when and where to tell someone about your illness that it is beneficial to wait until they see who and how you are so that stereotypes and stigma don’t overpower their decision to stay in a relationship.
Everything that is possible for people without schizophrenia is possible for people with schizophrenia we just have to be more creative to make some things work.
“These chocolates are so good. So good. Here, try one.” Every time I taste something good, whether it is salmon or a chocolate layered cake, I want my husband to try it. I want him to experience the same pleasure that I am. He will frequently say, “No thanks,” and I will say, “Please.” At that point, he usually gives in and tries what I am offering to him.
The scenario I just described is frequent in our house but is only one example of how I try to encourage my husband to experience things that I think he will enjoy. I often feel as if I take up too much space in our home, relationship and lives with my mental illness and my newly diagnosed health problems that require a strict diet.
Those of us who receive a lot of care from another person need to feel as if we can give something back. My husband falls into the category of a giver. Because he is a giver, his needs, wants, and desires are frequently at the back of the line. It gives me great pleasure to see my husband happy and to see him getting the things he wants.
The problem is, my husband will often turn down gifts and gestures of kindness. He will say, “No thank you.” I have told him over the years that if he is going to do so much for so many people he needs to allow others to give back to him. Most of us find a certain joy in giving to others and if my husband always gives but never receives people (me included) can feel left out of that joyous cycle.
I think caregivers in particular need to learn to accept from others, and particularly the people they are caring for. As I wrote earlier, I often feel like the focus or center of our lives revolves around me. Anything I can do to give back to my husband, to make him the focus once in a while pleases me, and it also helps alleviate the guilt of all the things we have to say no to because I am having symptoms.
I feel like there are so many disappointing times when my husband is looking forward to something and because of me, we will have to cancel at the last minute. If I can buy him things that he loves or would enjoy, have him try things, get him to spend time with his best friend, etc. then I feel like the scale is not so lopsided in my direction.
The old saying goes, “It is better to give than receive.” I think there is some truth to that statement, and for those of us who receive much, it is important that we can give and give generously in return.
My husband suffers so much disappointment due to my illness, but he would never say that, or even show it. I know and can see that it is true, though. When we first met, I would drive from Seattle to Los Angeles by myself to visit him. I haven’t driven a car in the last eight months. My husband and friends drive, or I take the bus or walk whenever I have to go out.
Cupcakes and humor.
When we first started dating, I would fly (even overseas) by myself. Now, when we travel we have to plan the trip around certain times of day (less anxiety), and we have to pack and prepare in ways to try to make the trip as pleasant and as smooth as possible. I almost always am overcome by anxiety at some point in every trip (usually at the airport and on the airplane).
Cupcakes and humor.
I was once so independent compared to how I am now. I was once so social and active. Now, we spend a lot of energy to make sure that my life is as stress-free as possible to keep symptoms at a minimum. I stay at home and have very little stress or interactions during the day. I even limit what I post on social media to avoid confrontation with others (stress).
Cupcakes and humor.
I know my husband would enjoy socializing more, but I will rarely agree to go with him (isolating socially is a real symptom of schizophrenia and one that has increased in me every year). There is so much my husband enjoys that he has given up to help provide me with the kind of environment I need to give me the most symptom-free existence.
Cupcakes and humor.
For all the sacrifices my husband makes, I try to be a supportive partner when I can. Once a month my husband asks me to make cupcakes because he has taken it upon himself to celebrate the birthdays of everyone in his office. My husband reminds me on the last Monday of every month, “If you feel up to it tomorrow, can you please make cupcakes?” It wouldn’t matter if I were suffering from my worst symptoms I would try not to let him down by having the kitchen counter free of the little cakes that help him lift the morale of his coworkers. It is so little to ask of me. In the past six years, I have never once let him down.
Cupcakes and humor.
When I am comfortable, I make up random songs and sing them constantly. I am a terrible dancer, but I love to shake a little booty with absolutely no sense of rhythm while walking from one room to the other in the house. I love to tell a lively story about anything and everything. To make this simple, I love to see my husband break into a belly laugh or at least a big smile, and no one can do that to him the way I can. So yes, it is the simple ingredients that hold even strained marriages together. May I suggest Cupcakes and humor?
I hope you will pop over and read my latest blog post on Psych Central. The title is, “In Sickness and Health: Loving Each Other Through Schizophrenia.”
Hello. I was gone all weekend celebrating my eighteenth wedding anniversary with my husband.
We didn’t go on a trip. We didn’t buy each other gifts. We didn’t do the “traditional” things people seem to do on a wedding anniversary.
We spent three days in each other’s company. We went to breakfast twice. We walked in the park and on the beach. We bought lots of snacks and binge watched our favorite show while eating comfort food all the while I rested my head on my husband’s chest.
We didn’t post one picture to social media. Why didn’t we post pictures of all that we did? We didn’t post pictures, because we don’t care if people don’t think we have an exciting life. We don’t care if people don’t know that we had an Italian breakfast, or went to one of the restaurants on Diners Drive-Ins and Dives.
I believe the reason we can enjoy each other’s company for three days and think of that as a celebration is because we don’t seek or need the approval of others on social media.
I know how most of my friends celebrate their anniversaries. I know that because they post bouquets of flowers their significant other bought, they post pictures of a meal they either went out to eat or prepared at home. They post pictures of wine bottles, candles, jewelry, or a trip to another city.
Some people on social media (not all, but some) don’t feel as if they have done or been anywhere without posting it on social media to get attention and count the number of “likes.” I don’t know if people post pictures to try and say, “Look at me! I’m important! I have an exciting life!” or if they are so lonely, and attention starved that they need the positive affirmation of a “like” for everything they do.
I feel like I share enough on this blog without sharing pictures of the meals I eat, the places I go, the friends I hang out with, or the trips I go on. I feel like I give people a look into my life and my heart by writing these blog posts. I’m not trying to impress anyone. I’m not trying to show off to anyone. I don’t feel the need to post every experience on social media to prove to myself or anyone else that my life is interesting and full of wonderful adventures.
Every day we get out of bed has the possibility of being a wonderful adventure.
I’m not envious of people who post vacation photos, food photos, or photos out with friends. I simply find myself saying, “That’s not for me,” and living the majority of my life away from the eyes of social media makes things feel very intimate, personal, and deep. I am present for people not a camera.
I just celebrated eighteen years with the love of my life and no cameras were there to document the weekend. With no eyes on us we got to just live life the way that we are – no Photoshop, no worries about lighting, or getting the right angle. We were not on show for three days – no one liked or ignored our pictures or posts. Servers, tourists and other people in our city saw us live and in the flesh. It was real. The weekend happened, but I don’t need to put it on display. It is in my heart from this day forward, and that does more for my happiness and well-being than a thousand pictures on social media.
If you haven’t put down the camera in a while, you may want to try it. You may find you gain more intimacy as you gain more privacy.
I am thinking about a couple of things today.
I am sick and when I am sick it is hard to focus on anything but the feeling of being sick. On days like this, it is easy to feel grateful for all the days that may not go the way you wanted them to but at least you were or are physically well.
It is easy to take people who you see every day for granted. It is easy to assume they will always be there and always feel the same way about you as they do today. Last night for the first time in my almost eighteen years of marriage it occurred to me that it is possible for my husband to fall out of love with me. Many times I have thought about the possibility of something happening to him, but this was the first time I thought that maybe there would be a time when he would discover that he wanted to be alone or with someone else. The thought of it broke my heart, but it did something else, too. It made me realize to pay close attention to the things my husband says, to listen when he talks, to care about the things he cares about, and to try and create long-term dreams together that we can both see ourselves in the future together.
My thoughts are not new or original, but something to think about on a Sunday afternoon that might give you an idea that makes you feel more gratitude, create more dreams, or be more loving and attentive to the people in your life. These things are all good to consider this day or any other.
My post on Psych Central today is about people marrying those of us with a mental illness and how those people are not automatically saints. You can read it here.
I had a new article posted on The Mighty. Some of you may have seen it before. It is an open letter to a hiring manager from someone with a mental illness looking for a job.
I am a day late, but I would like to wish all of you a Happy New Year! I hope 2016 is our best year ever!
Today in church these thoughts went through my mind, “What if a shooter comes in here and opens fire? Will I cover my husband’s body with my own? Will I grab that child sitting in front of me, and lay on top of her? I hope that I will do something, anything, brave and courageous.”
We aren’t big sports fans in our house, but we have a couple of teams that we follow, the team that represents our city, and the team that plays for the college my husband went to. One of our teams made it into a college bowl, and I immediately called my husband and said, “Do you want me to get 3 tickets or 4?” As I was waiting for my husband to reply, I thought about being in the stadium with a large group of people. Again, I thought about the possibility of a mass shooting.
Every day my husband goes to work on a military base. Once I was there with him, and there was a lock down because someone reported a shooter. We were in a different area than the report, so it wasn’t terrifying, but it was worrisome thinking of all the people we know whose offices were in the location of the reported shooter. (Everything turned out to be okay).
A few weeks ago, there was an active shooter in the building next to mine. I hid in my bathroom until the police evacuated me from my home. You can read about the incident here.
I know that I have a mental illness and that I tend to be paranoid, worried, and at times get morbid or disturbing ideas in my head (this is why I try not to watch anything too scary or gruesome on Netflix or at the movies) but there have been two events in my life that involved shooters. That can’t really be paranoia or my mental illness if it has been a reality in my life (not once, but twice).
It would be easy to let my thoughts overtake me on this issue. It would be easy to stop going to events where large numbers of people gather. I could get so fearful that I ask my husband to change jobs (he wouldn’t, but I could make him miserable with my fear and overprotectiveness).
I believe that I have to work through many parts of my mental illness (thoughts) in order to live the most productive life I can, and to enjoy life to the extent that I am capable. So today I came up with something to help me cope with all the random violence surrounding each and every one of us.
My husband and I decided when we got married to never go to bed angry at each other. In the almost eighteen years that we have been married, we have only failed at this once. There was only one time when we went to sleep before working out the anger we felt toward one another. I think of that as a pretty good record.
Today, right now, we are adopting something new into our relationship. We have promised each other never to separate from each other while we are mad, or unhappy with each other. In other words, before he goes to work, or before one of us runs an errand, or goes out to be with friends, we need to look each other in the eyes and tell each other that we love each other without anger, or without hard feelings.
There is only so much I can control on a daily basis. I can’t control the fact that terrible things happen to good people, and that it is possible, that one day we will be the good people something terrible happens to. I can’t control the fact that we could be the victims of a tragedy, but I can control the last words my husband hears before he walks out the door. I can control how many hugs I give him before he leaves our house. I can make sure I kiss his lips and tell him that he is the most important person in my world. Yes, I can control the knowledge he has about my love – that is something he can carry with him where ever he goes and in whatever circumstance he finds himself in. What I can control, I will, and that will help keep me sane in a world that seems to have lost so much of its sanity.